We live with a thief.

On a daily basis, he rips away our joy. Often he takes our sense of security, and every night, he steals our sleep.  His ultimate goal, I believe, is to take my oldest son’s childhood completely away.  Our thief is a neurological disorder –a combination of Tourette’s Syndrome, Obsessive Compulsive Disorder and Anxiety Disorder that shadows my brilliant and beautiful child every moment of every day.

Often we are able to live with our thief; to get along by keeping him in the background. We go about our lives and pretend everything is normal–that we don’t see the thief in the room.  We trick the thief with supplements that let our child sleep, or we cajole the thief by playing along at his game,  hoping to maintain a status quo.  And usually this works.

But yesterday was one of those days that the thief would not be ignored. My son broke down, tired of shouldering so much worry, exhausted from holding in his tics during the school day, and weary of “having to do what o.c.d. tells me” all day.  And as I watched my son cry, unable to fully communicate to me what was bothering him, because SO much was bothering him, all I could think about was how the thief has taken my smiling, laughing, easy-going baby away from me.

Perspective is a wonderful thing, though, and as luck would have it KET was playing a re-run of  “The Teachings of Jon”–a documentary about a family who embraced life with their Downs Syndrome child. The documentary details the challenges they faced, but more importantly it highlights their joy and optimistic outlook on life as a result of the experience.  They truly celebrate their son’s life, and are thankful for the gift of his love. It was just what I needed.

My son’s challenges are in no way similar to Jon’s.  Not just because my son does not have Downs Syndrome. In fact, when reading about various neurological disorders I am reminded that my son’s symptoms are indeed very mild compared to other children with the same diagnosis. Yes, it is hard to live with the constant anxiety, and sometimes his tics annoy him, but overall he is generally a happy, brilliant, imaginative, curious, active child.

And so when he brings me another beautiful piece of artwork he has created, or when he details the plot of his latest book with excitement, or when he takes off riding his bike too fast with a smile lighting up his whole face, I have to remind myself: we might live with a thief, but he can not take away this gift from God.

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